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Mental health, stigma, and Neglected Tropical Diseases

Ayipele Agomanap, 41, an Epilepsy survivor explains her situation to other members of her self-help group in Sandema, Northern Ghana. Self-help groups serve as solidarity platforms for members and facilitate their access to health and micro-economic programmes.

This article addresses cross-cutting issues in NTDs including stigma, discrimination, and mental health - to raise the profile of the links between these two neglected fields.

Disclaimer: Written by Julian Eaton - Senior Mental Health Advisor at CBM, this article has been reposted from www.mhinnovation.net.

Neglected tropical diseases (NTDs) that affect many of the poorest parts of the world have started to receive increased attention in the last decades. The London Declaration lays out much of this ambition, and has led to a great deal of collaboration and coordinated action by a consortium of actors. Probably most significant among these global efforts is the focus on reduction of transmission, and even in some cases, eradication. There is a very real prospect of achieving great progress, for example in guinea worm, leprosy, onchocerciasis (leading to river blindness), trachoma (also a cause of blindness), Trypanosomiasis (sleeping sickness), and others.

Why address mental health and stigma in NTD programmes?

While the attention and allocation of resources to combat these debilitating diseases is an important recognition of their effect on public health, unfortunately, less attention has been paid to addressing the needs of the people already affected by these conditions. In addition to the physical suffering and disability associated with NTDs, affected people often face social exclusion and have high rates of mental ill health. This is particularly true of diseases that have physical signs, like leprosy and lymphatic filariasis.

Recognising the links between NTDs and mental health is important, to ensure that health programmes adequately meet the needs of those affected, to improve outcomes for beneficiaries and programmes, and to ensure that NTD programmes receive the resources they deserve for comprehensive approaches to be delivered. For example, the level of comorbidity between NTDs and mental health problems has not been adequately recognised in most estimates of illness burden to date. For example, the burden of disease associated with lymphatic filariasis may be around twice as high if comorbid depressive illness is taken into account.

How are NTDs, stigma and mental health connected?

There are several links between NTDs and poor mental health:
  1. Some disease processes directly affect the brain in ways that lead to mental and neurological consequences;
  2. Chronic pain, reduced function, and discomfort are associated with increased rates of depression;
  3. The stigma that many people with NTDs experience as a consequence of disability, disfigurement or misconceptions about their illness appears to be a very important mediator to mental illness.
Some of the links between factors relevant to people affected by NTDs are summarised in this cycle. Stigma sets in train a process leading to disadvantages in many aspects of life, reducing social participation and treatment benefit, and increasing disability.

Stigmatising attitudes are often internalised by those affected, leading to feelings of shame and low self-esteem, which – along with social restrictions – cause mental distress and increase the likelihood of depression, anxiety and other mental disorders. Poor mental health, shame and stigma reduce self-efficacy and act as a barrier to help-seeking and treatment adherence. All these factors adversely influence effectiveness of treatments leading to poor recovery rates and maintaining disability levels and visibility of the illness, thereby further reinforcing negative attitudes and discrimination.

In addition to the direct effects of societal stigma, persons suffering from NTDs face several forms of structural stigma, manifest, for example, in the lack of resources allocated to this neglected group and low training levels and negative attitudes amongst health care staff. This in turn affects the availability, quality and uptake of treatments offered, feeding back in to the cycle of poor treatment outcomes, persistent stigma and poor mental health.

What needs to be done?

This cycle offers a range of access points for interventions, which have the potential of influencing not only their target but the whole cycle.

Available evidence suggests that the most effective way to combat stigma are multi-level multi-targeted interventions which empower people affected to take a key role in the development and implementation of interventions. Evidence-based strategies for promotion of mental health, and stigma reduction include:
  • Governments: improve access to mental health care in mainstream health services; link NTD and mental health services
  • NTD programmes: improve knowledge about mental health and stigma among staff; promote peer support by people affected; challenge negative community attitudes
  • Funders and NGOs: include mental health and stigma reduction as an integral part of investment in programming, recognising the importance of well-being as a priority for service users, and for improving outcomes.
This exciting new area of work offers opportunities to implement many of the lessons learnt in global mental health in the poorest communities. It is a good example of the way that the mental health community can demonstrate efficacy of practical interventions in other sectors and settings.


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